TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘TBI Caregiver’

Survivors SPEAK OUT! . . . Gage Mabry

Survivors SPEAK OUT! Gage Mabry

presented by

Donna O’Donnell Figurski

 

Gage Mabry 1

Gage Mabry – survivor of brain injury

1. What is your name? (last name optional)

Gage Mabry

2. Where do you live? (city and/or state and/or country) Email (optional)

Missouri, USA

3. On what date did you have your brain injury? At what age?

October 24, 2015  I was 20 years old.

4. How did your brain injury occur?

I was working, and a fifteen-pound scanner fell from a twelve-foot ladder overhead. It landed on top of my head.

5. When did you (or someone) first realize you had a problem?

Immediately. I knew that I took a good hit to the head. It was like being a cartoon character in a slow-moving cartoon.

6. What kind of emergency treatment, if any, did you have?

There was no emergency-care immediately after the accident. I continued to work the rest of my shift. I was disoriented, my vision was blurry, and I developed a massive headache. It wasn’t until my mom tried to wake me up that we realized there was a problem.1304_Symptom_12

7. Were you in a coma? If so, how long?

No

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

I was sent to a company doctor, who at first diagnosed my injury as a concussion. When my symptoms continued to persist and worsen over the next few weeks, the company sent me to have a CT (“cat”; computerized tomography) scan, which showed no abnormalities. Over the next three months of “rest,” my symptoms continued, and new ones developed. So now, my brain injury was diagnosed as Post-Concussion Syndrome. I was sent for neurological testing, which showed deficiencies in brain function. I was then referred for further treatments to involve pain management, balance therapy, and counseling. But, due to the situation, I never received any treatment other than what my family could try and provide. Now after two years and an independent medical exam, I’ve been diagnosed as having “Diffuse TBI” (traumatic brain injury).

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?

headacheI have severe migraines that last for days, photophobia, sensitivities to loud sounds and to certain smells, and balance issues. I also have issues with depression, anxiety, anger, and fatigue that are so bad that I can’t even function some days.

10. How has your life changed? Is it better? Is it worse?

This is a hard one. My old life is gone, but my new one is filled with good and bad … it’s a work in progress!

11. What do you miss the most from your pre-brain-injury life?

Activities I used to do; my friends.

12. What do you enjoy most in your post-brain-injury life?

All the possibilities

Gage Mabry 2

Gage Mabry – Brain Injury Survivor

13. What do you like least about your brain injury?

The headaches

14. Has anything helped you to accept your brain injury?

My mom!

15. Has your injury affected your home life and relationships and, if so, how?

This has been a roller-coaster ride. It has devastated my family financially, but it has brought us together – with more love and support for each other that we had before. My friends and girlfriend have their lives to live, and I just wasn’t part of their plans anymore.

16. Has your social life been altered or changed and, if so, how?

This difference has been the hardest for me to accept. I went from being a popular, outgoing, and athletic person to a withdrawn, angry, and depressed person overnight. Social anxiety has been the hardest things to try and overcome, but I’m doing it day by day. Finding humor in that anxious setting has been the best medicine ever! I explain it to people as an “EMP” … electrical magnetic pulse … when I can’t remember my left from my right or forget how to speak. It eases the tension.

Mabry, Darlene Watson Caregiver

Darlene Watson Mabry – Caregiver

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

My MOM! And, yes, it has been so hard for her. I don’t know how she does it. She’s a

superhero to me!

18. What are your plans? What do you expect/hope to be doing ten years from now?

I still have my dreams that I will fulfill. They have just been altered. Instead of a “Game Designer” … it’s a “Game Broadcaster”; my physical-fitness regimens have been modified to walking instead of running. “Compromise” is what my mom calls it!

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

You may have setbacks, but that doesn’t mean the game is over!

20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Never give up – regardless of how bad it gets – because you belong to a special group now … you are a Survivor!

 

Gage’s mother wrote a moving “Faces of Brain Injury”  Click to read

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Sneak Peeks for Prisoners

My book, Prisoners without Bars: A Caregiver’s Tale, will be released to the public on November 1, 2018 by WriteLife Publishing of Boutique of Quality Books Publishing Company. Here are pre-order links for Barnes & Noble and Amazon.

Excerpt 4

Chapter 4

Unthinkable Odds

presented by

Donna O’Donnell Figurski

Crazed Woman

… I must have looked like a zombie. I stood mute, wringing my hands, breathing out and in and out again. I didn’t know what to do. I felt paralyzed. Brain SurgeonMy permission was needed to operate on my husband’s brain. How could I give it? How could I allow Dr. Hulda to ­work on my husband’s beautiful, smart brain? …

 

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TBI Tales . . . . . . . . . . . . . . . Knitting through the Honeymoon

Knitting through the Honeymoon

by Liza Spears

presented

by

Donna O’Donnell Figurski

 

bride-and-groom-clipart-14I’ve been married for almost seven months. Since my wedding, I’ve knit twenty-five hats, five sweaters, three scarves, and one blanket.

I started my first “married life” knitting project on the third day of my honeymoon. It was a ribbed seed stitch hat in my wedding colors–deep reds and purples. I pretended that it was for my husband, even though I knew there was way no he’d wear such a feminine pattern.Liza Spears Wedding Photo

I started the hat over more times than I can count. I didn’t start over because of any mistakes–I hadn’t dropped a stitch or miscounted any rows. The pattern wasn’t complex. I just knew each time I finished that it wasn’t quite right. Every time I got to the last row of the hat, I’d finish as instructed–threading the yarn through the remaining stitches and pulling it tight. Instead of weaving in the ends, though, I’d just completely undo the whole thing and start from the beginning.

I knew how to knit before I got married, but I never trusted myself to do anythingclipart-knitting-DP2n1R-clipart more complex than a simple hat, knit in the round, just knit, purl, knit, purl. I’m happy to say that out of the twenty-five hats I’ve knit since my wedding day, not a single one is that old favorite of mine. Before the wedding, I avoided new patterns because I avoided counting as much as possible. How could an activity be fun if it involved math?

Liza Spears 062418

Liza Spears – Knitter Extraordinaire

It was that third day of my honeymoon and that brand-new hat pattern that taught me how much I needed to count stitches. I learned that if I was counting stitches, I wasn’t counting other things, like the number of the days my husband had been in the ICU (intensive care unit) or the number of nurses that cried when they saw me. If I focused on the 44 stitches I had to cast on to a pair of size 11 needles, I might not notice that his ICP (intracranial pressure) levels* kept creeping up. The number 44 isn’t so scary when it’s just the number of stitches in a row, but when it’s the number flashing on your husband’s monitor next to “ICP” as one of his nurses ushers you out and three doctors rush in, it is scary.

I wasn’t supposed to have time to knit on my honeymoon. I was supposed to be rappelling down waterfalls in the Azores and soaking in thermal baths, but you can’t do that when you wake up in the middle of your wedding night to the sound of your husband falling down the stairs. Going to the bathroom should be easy. It shouldn’t end with your husband lying in pool of his own blood. The first time you use the phrase “my husband” shouldn’t be when calling 911, and as much as you love your bridesmaid, she isn’t the person you should be sharing your bed with. I wasn’t supposed to spend the third day of my honeymoon in the waiting room of the ICU sobbing with my mom, not understanding why my husband wasn’t awake, and what it meant that his nurse had kicked me out.

In the waiting room, I just focused on the ribbing of the hat. Knit 3. Purl 2. Repeat. I was already switching to larger needles to begin the rest of the hat when my husband’s nurse came out and told me I should say goodnight. The pressures in my husband’s brain were just too high for any extra stimulation, even if I just sat next him counting my knits and purls.

The hospital called me at 4 am the next morning to tell me that they were rushing my husband in for an emergency decompressive craniotomy. They could no longer control the rising pressure in his brain with medication alone, so they removed half of his skull.

I realized I’d have to adjust my hat pattern if it was going to fit my husband’s new head, so I started over, knitting and counting the stitches until he woke up.

*Intracranial pressure levels between 7 and 15 are normal. Levels above 20 are dangerous and indicate brain swelling.

To read more posts by Liza Spears, click on Knit Neutrality.

(Disclaimer: The views or opinions in this post are solely that of the author.)

If you have a story to share and would like to be a part of the SPEAK OUT! project, please submit your TBI Tale to me at neelyf@aol.com. I will publish as many stories as I can.

 

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TBI Tales . . . . . . . . . . . . . . . . . . This Song Could Be a Caregiver’s Anthem

This Song Could Be a Caregiver’s Anthem

by

Donna O’Donnell Figurski

David & Donna Aunt Irene's Funeral 060718

 

I happened to hear this old hit song (“Lean on Me”) a couple of days ago. After listening to the lyrics, I realized it reflects what we caregivers do. We just want to help.

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We don’t look this bad.

As the song implies, we give much-needed help. “Lean on Me” could be our anthem. Give it a listen.

PS. I just had to dance with this man to that song and we each did a bit of “leaning on.”

 

(Disclaimer: The views or opinions in this post are solely that of the author.)

If you have a story to share and would like to be a part of the SPEAK OUT! project, please submit your TBI Tale to me at neelyf@aol.com. I will publish as many stories as I can.

As I say after each post:

Please leave a comment by clicking the blue words “Leave a Comment” below this post.anim0014-1_e0-1

Please follow my blog. Click on “Follow” on the top right sidebar. (It’s nice to know there are readers out there.)

If you like my blog, share it with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it with your enemies. I don’t care!

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(Clip Art compliments of Bing.)

 

Caregivers SPEAK OUT! . . . Theresa Friedle . . . . . . . (caregiver for her husband, Scott)

Caregivers SPEAK OUT!

Theresa Friedle (caregiver for her husband, Scott)

presented by

Donna O’Donnell Figurski

 

Theresa Friedle & Husband Scott IMG_20161112_102405896.jpg

 

1. What is your name? (last name optional)

Theresa Friedle

2. Where do you live? (city and/or state and/or country) Email? (optional)

Tomahawk, Wisconsin, USA     theresaj4man@gmail.com

3. What is the brain-injury survivor’s relationship to you?

The survivor is my husband, Scott. At the time of the accident, Scott and I were engaged. We were married on June 3, 2017.

How old was the survivor when he/she had the brain injury?

The accident happened two days before Scott’s 47th birthday.

What caused your survivor’s brain injury?

We were both working as truck drivers. Scott was picking up a load of plywood, which needed to be tarped. Something happened when he was on top of the load spreading out the tarp, and he fell anywhere from thirteen to nineteen feet (depending on if he was standing upright). He landed on his head on a concrete floor.

4. On what date did you begin care for your brain-injury survivor?

Scott’s injury happened on October 27, 2016. It took me ten and a half hours to get to him. I’ve been at his side ever since then.

Were you the main caregiver?

At first, the doctors and nurses were Scott’s caregivers. When he was discharged from rehab on December 22, I became his main caregiver.

Are you now?

Yes

How old were you when you began care?

I was 46 years old.

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

At home, I had a young adult daughter, who was expecting her first child, as well as my younger two children (older teenagers).

6. Were you employed at the time of your survivor’s brain injury?

Yes. I was working for the same company as my (now) husband. I had a permit for a commercial driver’s license.truck4

If so, were you able to continue working?

No. However, I was told about a program through my state called “Family Care.” I now get paid to take care of my husband.

7. Did you have any help? If so, what kind and for how long?

I learned a great deal from the doctors, nurses, and therapists who worked with Scott. I asked a LOT of questions. However, once Scott came home, other than my family pitching in with the chores – no. It’s my job.

8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

Immediately – while Scott was in the neuro intensive care unit.

Scott’s family lives quite a ways away, so, to facilitate keeping them informed of his progress, I started a Facebook page about him. It turned out to be a wonderful support system.

9. Was your survivor in a coma?

Yes. Scott was in a medically induced coma. He had a craniotomy (to allow his brain room to swell), he was intubated, and he had two ports (one for meds and the other for nutrition).

If so, what did you do during that time?

I stayed by Scott’s side – talked to him and sang to him. I prayed. I kept his family informed, etc.

10. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? Theresa Friedle & Husband Scott IMG_20170705_220110

Yes. Scott was transported to an inpatient rehab facility closer to home. They provided him with occupational, speech, and physical therapies.

How long was the rehab?

We were there for twenty-two days. Scott continues to see speech and physical therapists twice a week.

Where were you when your survivor was getting therapy?

I stayed with Scott in the rehab center.

11. What problems or disabilities of your brain-injury survivor required your care, if any?

When Scott was first home, he needed help with almost everything! He was still in a wheelchair, and he needed assistance toileting, dressing, bathing, and more. He now walks with a cane, needs occasional help toileting, can dress himself, can help cook meals, does simple crafts, etc. He can’t drive, so I also transport him to and from wherever he needs to go.

12. How has your life changed since you became a caregiver?

Our lives have changed dramatically. Everything we do revolves around Scott’s needs, doctor appointments, and outpatient physical and speech therapy appointments. We can no longer attend church services, and we cannot go anywhere where there will be loud, noisy crowds.

Is it better?

In some aspects, yes! I get to be home with my children, and I get to see my grandson more.ITheresa Friedle & Husband Scott & Grandkids MG_20170714_083217

Is it worse?

Yes. Scott is limited as to the things we can do, and we cannot drive a semi right now – if ever.

13. What do you miss the most from pre-brain-injury life?

I miss going to church and driving a semi. The semi meant super-long days and hard work strapping and tarping loads. Driving it was often scary with how some people drive around us. But, it was something I’ve wanted to do since I was a teenager!

13. What do you enjoy most in post-brain-injury life?

I love that I’m able to be home with my family! I love that I get to take care of Scott, who remains a super-loving wonderful man!

14. What do you like least about brain injury?

Scott’s constantly in pain.

15. Has anything helped you to accept your survivor’s brain injury?

AliveWhat has helped me most is being super-grateful that Scott’s ALIVE! I feel that, even if Scott stays how he is now, we still have a great deal to be thankful for.

16. Has your survivor’s injury affected your home life and relationships and, if so, how?

Of course it has! Every aspect of our life has changed. We had to move our bedroom to the dining room because Scott cannot climb up and down the fifteen stairs to the upper level. Our laundry room is currently being remodeled so that Scott will have a shower. Now, I have to give him sponge baths in the kitchen. My children are happier because we’re home most of the time now. Through the Facebook page I created, I was able to develop a relationship with Scott’s family. They are so warm, loving, and welcoming.

17. Has your social life been altered or changed and, if so, how?

We seldom eat at restaurants anymore. The busyness of them overwhelms Scott. We can’t go to church for the same reason. Social events are out. Friends can only stay for an hour or so, otherwise Scott’s exhausted. At this point, most of my social life is through Facebook. Honestly, we’re NOT dwelling on that!

18. What are your plans? What do you expect/hope to be doing ten years from now?

We’ve discussed a few options, but none that is viable at this point. Until we know how permanent various parts of Scott’s injuries are, we really cannot plan much of anything. We make tentative plans for a week or two at a time, knowing that we can only do them IF Scott is having a good day that day.

19. What advice would you offer other caregivers of brain-injury survivors?

Caregiver Tips -clipart-blackboard-helpful-tips-detailed-illustration-heplful-text-43676517This is a SUPER-hard job, as our emotions are involved!

Be gentle with yourself and super-patient with the PERSON you are caring for.

Join support-groups, even if you can’t physically attend a group. (I have found several through Facebook by entering “TBI support groups.” TBI=traumatic brain injury.)

Make sure you get the rest you need.

The hardest for me? ASK for help when you need it!

Celebrate each step forward. Little steps are STILL STEPS!

It’s going to be a very long road. Educate yourself about TBI.

Get involved with the therapists – you will get a better sense of what your loved one can and can’t do. (This helped me tremendously with selecting activities for Scott. I wanted to give him something that he CAN do – so he has a sense of ACCOMPLISHMENT. I praise his efforts, regardless of his success. I don’t live with Scott’s pain – but I can see how HARD various tasks are for him to do. When Scott is frustrated that he can’t do something that he used to do easily – Scott’s usually upset about household chores, etc. – I remind him that there is a HUGE difference between CAN’T and WON’T!)

Take notes when you go to various doctors. I have found that their records are often INCORRECT.

Life is very, very different than what we had envisioned, but “different” does NOT need to equate with “bad.”

Attitude is EVERYTHING!

It’s OK to cry.

It’s OK if all the chores aren’t completed every day. Your best IS good enough. Know that your best fluctuates every day – sometimes several times a day. One day you will be able to get everything that you want to do done! Woohoo! Another day, your best is simply getting out of bed!

YOU ARE NOT ALONE! 

20. Do you have any other comments that you would like to add?

Sometimes reading the answers to these questions sparks more questions. I would be happy to explain further.

 

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New NEWS: My Radio Interview about My Upcoming Book

New NEWS: My Radio Interview about My Upcoming Book

presented by

Donna O’Donnell Figurski

Jamie Crane-Mauzy 053118

Jamie Crane-Mauzy

 

On May 27, 2018, Jamie Crane-Mauzy, a host on the Brain Injury Radio Network, interviewed me about my upcoming book (Prisoners without Bars: A Caregiver’s Tale), which will be available to the public on November 1, 2018, but that can be pre-ordered now. The 80-minute show has been archived and can be listened to at any time.

Donna O’Donnell Figurski

Prisoners

Prisoners without Bars: A Caregiver’s Tale

 

 

 

 

 

 

 

 

 

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it (intact) with your friends. It’s easy! Click the “Share” buttons below.

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New NEWS: Preorder Prisoners without Bars: A Caregiver’s Tale

Prisoners without Bars: A Caregiver’s Tale

Did you know you can preorder your copy of my book, Prisoners without Bars: A Caregiver’s Tale?

You can! It’s easy.

You can order it in e-book form or paperback copy on Amazon.com or Barnes & Noble.com.

 

 

 

 

 

 

 

 

Just click the book cover or the title below.

Prisoners without Bars: A Caregiver’s Tale

Can’t wait for you to join our journey.

 

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

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